Does anyone have a solution to help manage Reclast side effects?

Posted by dingus @dingus, Aug 15, 2024

Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?

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gently | @gently | Dec 19, 2024

In reply to @windyshores "@jheieck you describe the Prolia catch-22 (Prolia trap?) so well and it may help others. So..." + (show)

@windyshores

@jheieck you describe the Prolia catch-22 (Prolia trap?) so well and it may help others. So sorry you are in this position. This is what my doctors are afraid of. But there are instances when Prolia is also the only option. This is all so difficult.

I just want to add something here about posting our experiences, research, and avoiding advising (like doctors!). Many of us (including @susanjane77) seek more than one opinion, For cancer I got 4 opinions! Then we come on this forum or talk to McCormick or read something and we end up with like 10 opinions. Any post on here is an opinion and we try to make it clear that it is not advice.

The field of osteoporosis needs more research. Too many of us are in one "trap" or another. Noone has told me what I will do after Tymlos, Evenity and Reclast. Some of us have a lot of years left.

Now that Evenity is on the market, since only 2019, things are even more complicated since there is little knowledge about whether you can do Tymlos or Forteo afterward, or whether it helps with Prolia rebound, or whether Reclast can be substituted for the last half, or whether we can eventually do short bursts of Evenity between other drugs, etc. etc. Researchers didn't even know that it was only anabolic for a short time. (They also didn't know that anti-resorptives could cause ONJ or femur fracture, or that Prolia could cause rebound.)

I am grateful for my doctor who has shown flexibility given my complex health situation. But doctors are bound by "evidence based medicine" meaning studies. And we are lacking studies!

I apologize for being persistent in suggesting questions for someone's doctor or suggesting another opinion from time to time. It is not helpful to express distrust of doctors. I believe there is a good fit for each of us. Many on this forum do research and then have well-informed discussions with their doctors, which can result in going a little outside the bounds of evidence or trying something new.

I am grateful for the ideas that others have brought to this forum which have helped me a lot. I think we all have the intention to be helpful and again I am sorry @susanjane77 if it came off as being too pushy.

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No one is misled into thinking that opinions, citations or individual experiences constitute proof of what their own experience will be. Because of your broad experience with ostoeporosis medications your contributions are excessive in value. It helps that you have interactive providers and that you yield their views here on Connect.
It appears to me that the distraction here is a misunderstanding of your intent caused, not by pressure you exert, but objection to the view you are expressing.
Osteoporosis is stressful often we are uncomfortable, on medication, in pain. It isn't surprising that misunderstandings happen; osteoporosis is stressful, can be painful, uncomfortable and many of us are on medications that alter our normally sweet dispositions.
I hope we all continue to have intense, divergent discussion of this treacherous disease.

jheieck | @jheieck | Dec 19, 2024

In reply to @awfultruth "@jheieck I'm so sorry you are in this situation. It's clear that you are doing your..." + (show)

@awfultruth

@jheieck I'm so sorry you are in this situation. It's clear that you are doing your homework and trying to find a reasonable solution to what is unfortunately an unreasonable problem.
I'm going to ask some questions, offer some speculations, perhaps some possibilities and one paper on discontinuing Prolia.

First do you really have to make the decision to stop Prolia right now with no time left as your 6 months period is up?
Maybe take one more Prolia shot and give yourself another 6 months to think this thru.

Is the Feb knee replacement driving this in one direction or other?

My opinion is do not stop Prolia without some drug transition. Too dangerous. Evista or bio-identical hormones could help somewhat but not at all likely to be enough.

If you could see one of the top osteo doctors you could get some advice on how to navigate this. And of course you need expert dental advice also. There should be doctors and dentists who have already dealt with this situation. Perhaps a consult with Keith McCormick could be helpful.

Perhaps staying on Prolia is your best choice or does that make your dental situation impossible to live with?
Is one or two infusions of Reclast definitely out? I know your jaw bone problems are not a good starting point for using Reclast but you are weighing all sorts of imperfect options here. I'd suggest not ruling out anything based on general rules.

In weighing the decision whether to stop Prolia I can offer some slight clarification of the consequences.
There are two slightly different huge factors to consider when stopping Prolia esp after long term use.
I make the distinction between the two because the odds of them happening and the consequences if they do are related but quite different.

One, without a follow up most everyone will lose the gains they made with Prolia and sometimes more that what they had gained. Depending on where you were when you started that can be pretty awful but it does not mean you will have the multiple spinal fracture problem. Maybe you will lose a lot of bone but not start fracturing.
Number two is the multiple fracture problem. As far as I know no one knows the frequency of this problem. We know it happens but we don't know how often. We know it is more likely if you've been taking Prolia longer but I've not seen anyone suggest a way to predict who this will happen to.

So, almost everyone stopping Prolia without a follow up (and one that is successful) will lose their Prolia gains. But it is unknown what percentage will have the multiple fracture disaster. I guess that it is a fairly small percentage of those stopping Prolia but that is just a guess and no comfort to those who suffer this
consequence.

A wild speculation on my part is that you could try to transition off of Prolia with Reclast and if successful then do a bone builder (Evenity, Forteo or Tymlos) to restore a more healthy bone building/bone remodeling climate. This is just theoretical but in looking at how to deal with osteoporosis long term we need to find out if we can alternate between antiresorptives and bone builders. Perhaps shorter courses of each after the first early rounds of them could lead to a healthier balance between building, remodeling and resorption and dodge the ONJ and femoral fractures and bones that are too brittle?

Sorry this was so long. I wish you good luck with your decisions.
Here's the discontinuing Prolia paper:
https://e-enm.org/journal/view.php?

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Thank you for this thorough and concise feedback, and your questions, which are pretty much everything that's running through my mind right now. The reason I wanted to go off Prolia in the first place is to be able to complete my dental work without risking ONJ. But, after doing all this research, and seeing that my options are fairly slim, I have been reconsidering at least taking one more Prolia injection. I'm trying to time the dental work further out than I did the first time, like possibly 5 months out rather than the 4. Someone who posted earlier had mentioned that there is a small window when you are on Prolia that you can have dental work and it's that 5 month, plus another 2 weeks window. If I were to do that, and I did not experience ONJ after the dental work, I could then transition off of Prolia to Reclast and do one to two years of Reclast, and then try to transition to something else after that. Yes, my initial concern was the dental work, but another concern was how long I've been on Prolia and how few long-term studies are out there. For a while now, I have had severe lower back pain and joint aches, above and beyond any arthritic symptoms I've had in the past. I will be seeing the endocrinologist January 6th, and if he recommends staying on Prolia a little longer so that I can get the dental work done, I will do that. But, in January I will already be 7 months out from my last Prolia injection, which was mid June. This situation is further complicated by the fact that my calcium serum/plasma is quite elevated, in the 11.5 range, and has been since 2021. My last blood test also showed elevated parathyroid level, so the bone health specialist actually wanted me to see an endocrinologist to possibly have my parathyroid removed, as she thought this might help alleviate some of my symptoms, even my osteoporosis symptoms. I'm completely confused about what to do, but seeing the endocrinologist hopefully should some light and give me some direction. Thank you so much for taking the time to follow up and reply to my dilemma.